Grieving parents who lost a baby in pregnancy use project to demand improved hospital reviews

The completed project, ‘Why my baby died’, is on display at Cork University Maternity Hospital on the fifth floor to mark Baby Loss Awareness Week.

Parents who lost a baby in pregnancy have spoken about improving hospital reviews in a graphic novel-style project, led by the Pregnancy Loss Research Group in Cork.

Parents talked about being “in a daze” after their loss and needing clearer signposts to supports and information about the review.

These “powerful” illustrations are based on research with 20 bereaved parents. The anonymised drawings tell their stories in their own words.

One panel shows a mother crying and saying: "The system should be changed, it was a long time getting the review done. 

"Having it hang over you for months is torture.” 

Another shows a maze of offices with parents on the outside, and says: “The amount of information hidden was an absolute joke. They were transparent only when it suited them."

Another shows a drawing of a mother and doctor chatting over tea. She said: “He was really lovely, he offered his time, he was respectful of me as a grieving parent.” 

The completed project, ‘Why my baby died’, is on display at Cork University Maternity Hospital on the fifth floor to mark Baby Loss Awareness Week. This includes the hospital’s annual remembrance ceremony on Friday."

Professor Keelin O'Donoghue, lead with the Pregnancy Loss Research Group, said this is a learning project for staff.

“It’s a way of showing parents’ voices and highlighting that but largely aimed at healthcare professionals, policy makers, other clinicians,” she said.

“It’s highlighting how we should involve parents bereaved by stillbirth or neonatal death in the review process around their baby’s death.” 

The group wanted to translate its academic research to a more engaging format. 

A grant from the Irish Hospice Foundation meant they could commission illustrator Amy Lauren to work on this comic-style booklet.

“It’s a way of illustrating parents’ words about what mattered to them, and we can read that to see what matters. (So we can) see when things go well what difference that makes and when things don’t go well, what difference that makes,” Prof O'Donoghue said.

She added: “We’re trying to use the illustrations to share parents’ experiences about how they are involved and how they should be involved in ways that benefit them and the review process itself — to try and change policy and practice.” 

The images, she said, are “quite powerful” in contrast to reading academic findings.

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Other parents may find the booklet useful as it lets them know they are not alone, she suggested, but emphasised the main aim is to help staff understand what their patients are going through.

“The illustrations tell the reality of what parents go through,” she said.

The international awareness week runs until October 15 and on that day the Cork University Maternity Hospital building will light up in pink and blue.

The group's original research “Bereaved parents involvement in maternity hospital perinatal death review processes: ‘Nobody even thought to ask us anything’" can be read here.